I can’t believe that it’s almost a year since I was diagnosed with breast cancer. A lot has happened in that time. Those of you who’ve been following my blog will know that I’ve had chemotherapy, 2 operations and radiotherapy, and it’s getting harder to remember how I felt during that time.
Yesterday I saw my surgeon for my annual follow-up. I’ve done many follow-up clinics myself, and it’s fairly routine. Check the breasts for lumps, look at the scar / reconstruction and check the patient is happy, review the mammogram and say “Goodbye, see you in 4 years at the end of treatment”.
Most women are glad to be discharged from clinics. The vast majority are well when we see them, and it saves the hassle of queuing and paying for a car parking space, waiting in a busy over-running clinic for what is often a 5 minute visit. If breast cancer is going to recur, it is unlikely that it will produce symptoms that coincide with an annual check-up, and most women will see their GP if they have any concerns. We give women a checklist of things to look out for, and send them on their way.
I have heard from my ladies who have had chemo that they find it much harder to be discharged. After being “hospitalised” for 6 months with frequent outpatient appointments, blood tests and investigations, it’s feels quite scary to be left on your own.
My nipple has faded and is very pale in colour, and she asked if I wanted it tattooed to make it match my normal nipple. I said no – I don’t really look at my reconstruction in the mirror, and as it sits higher than my natural breast, which will slowly ‘head south for winter’ as I get older, I didn’t see the point in trying to make them match.
I found out that my first yearly mammogram was normal, which is good. Except I don’t think I will ever trust a mammogram or MRI again as they didn’t show my original cancer. I now understand how my patients with lobular cancer that was missed on a mammogram feel when I tell them that we will follow them up with mammograms. As a surgeon, I know that the vast majority of breast cancers are seen on a mammogram, and that includes recurrences in the breast and new cancers in the other breast. It is very rare for women to have two occult cancers in each breast. That is why we offer everyone a mammogram and if there are any concerns, we offer an MRI.
In my case, the mammogram and the MRI missed the lobular cancer, although the MRI saw the ductal cancer. My best friends are going to be my fingers with regular breast examination. It’s going to be hard to trust that my normal mammogram is actually normal, and I need to accept the science and the data from all the trials I’ve read, and to practice what I preach.
On my own
My oncologist discharged me several months ago, and when the surgeon said goodbye, I felt alone. It’s up to me now to be on the lookout for signs of recurrence, as no-one is going to arrange regular scans, just in case (rightly so, by the way). That night I felt really, really low, and my husband couldn’t understand why I wasn’t celebrating – after all, my mammogram was normal and I’d been given the all clear. My taking of the news was – I’m cancer-free now, but who knows what the future holds, and who’s going to check in case I miss something myself…? The reality of having been a cancer patient was sinking in, and it took me a good couple of days to shake my low mood.
Close family are’t going to want to hear me make a fuss of every little niggle I have – it would be exhausting for them. I had a few funny aches and pains several months ago, and after a month, saw my GP who arranged a ‘reassurance CT and bone scan package’ – which thankfully were normal. But it was stressful for my husband and I. I was paranoid that the cancer had spread, and my husband was certain it hadn’t, and that I would be fine. Those words again. Luckily this time he was right.
Although it was good that the scans were clear, it means that the aches and pains are things I have to live with. And I’m now realising what life will be like living after a cancer diagnosis. I technically don’t have cancer anymore – the fancy term these days is NED (No Evidence of Disease), but it will always be at the back of my mind. It’s up to me to be my own advocate, without it taking over my life. I’m still doing my best to be positive, and be thankful for everything I have to look forward to. There will still be sad days, such as when I hear bad news about friends with breast cancer and then imagine myself in their position. And that’s OK. It’s part of living with cancer and sharing your life with others. Onwards and upwards, and a new sporting challenge, I think.